This post is part of the ME Awareness Week Synchroblog. Want to take part? Here’s how:
1. Produce your own post on the topic “Research and Controversies”, as narrow or broad as you like. It could be a blog post, video log, story, poem, picture, or even just a comment on the blog… it’s your take on the topic and what you want to say.
2. Post a link to what you’ve produced in the comments section. You might want to provide a short description, too.
3. Check out some of the other links; leave comments if you can, and share what you like!
4. Tell people about it – this is about raising awareness, after all.
Today’s subject is Research and Controversies in ME (or CFS, CFIDS, ME/CFS… and there’s a controversy right there!) But – why are these two subjects thrown together? We’re not talking about some rare and recently discovered mild illness – we’re talking about a widespread disease, something that by some estimates has more sufferers than breast cancer, HIV/AIDS and lung cancer combined; a disease which has had known outbreaks since the 1930s; a disease which causes one in four sufferers to be so disabled that they can’t take care of themselves.
Yet somewhere along the way, it did become controversial. What started out being widely acknowledged (due to the overwhelming medical evidence) as a neurological disease, which severely afflicted previously healthy-subjects and was often lifelong, got slandered as “all in the mind”, something put on by the bored and overworked to get a holiday or a free ride on benefits.
The overwhelming evidence still points towards it being entirely biological. It still says it’s a disease of the nervous system, and also the immune system, the hormone system and goodness knows what else. But somehow the public and the majority of healthcare workers (at least in the UK) have been spoon-fed the lie that it’s at best a mental disorder, needed to be treated by convincing the pretender that they are healthy, and forcing them to do increasingly large amounts of exercise and activity – the very things almost guaranteed to make the ill person worse. And other diseases have been bundled in too, further complicating valid diagnosis and useful treatment.
In the UK, the vast majority of research that purports to be into ME is a sham, based on false theories already a hundred times disproved before they were even voiced (had anyone cared to check). What little biological research there is is underfunded, ignored, and ultimately undermined by those who insist that this devastating, life-threatening disease is nothing more than imagination.
Samuel has a name for this: Misopathy*. (Mis: wrong, pathy: disease).
Of course, a lot of sufferers know exactly how this happened, and who is behind its continuation. But knowing how it happened is only important in so far as it helps stopping it happening to other diseases***, and turns the tide against suffering, giving ME the recognition it requires. Justice would be nice too, but in this life I’ll settle for freedom.
There is hope, though. There’s real biological research happening all the time, and it’s been increasing in the recent past. Just recently we have had the release of Newton’s muscle studies, confirming what we already knew about the abnormalities in muscle cells of ME patients, as well as one of the most exciting developments – the Rituximab trial, a potential treatment which is looking extremely successful in early studies.
So – what’s your take on it? What’s the biggest controversy, or the one which hits closest to home? What’s the most exciting development or most misunderstood part of the illness? Leave a comment here or on my Twitter!
** And yes, it will happen to other diseases. ME wasn’t the first disease to be treated in this despicable way (MS? Parkinsons? AIDS?), and presumably won’t be the last.
Edited for clarity on 12/5/13